FEW YEARS AGO, blind people living in the New York area received
letters from one of the principal organizations for the blind, announcing
a study on privacy. Participants would earn a small amount of money
for taking part in the study. My blind friends found the whole idea
ridiculous. "It shows how out of touch the Lighthouse is," Alice
said. "We don't have any privacy." When I mentioned the letter to
Diana, a blind friend living outside of New York, she said, "Privacy?
reactions made me stop and think. I have to concur that blind people,
by virtue of their disability, do not often have the luxury of keeping
things private. Let me give a few examples.
have sighted readers who help me with my mail, since I have no way
of knowing who it is from, much less what's in it, unless I spend
a lot of time with the Optacon* and I don't always feel up to doing
this. One day I received a magazine in the mail. Figuring it was
an advertisement, I showed it to a reader, a nice woman but conservative.
"Where did you get this?" she asked in horror. "It's full of pictures
of naked men and tons of penises. It's disgusting! This must be
a mistake! I'll throw it out."
to do? I wanted to keep the magazine so that my one gay reader could
describe it to me, but if I acted too interested, what would Jean
think? I hatched a plan. That night, I'd conveniently forget to
ask her to takeout the garbage. When our reading session was over,
however, Jean was quick to be helpful: "Oh, I'll throw out your
garbage." "Umm," I said, "I'm running short on garbage bags. I'll
dump it downstairs later and keep the bag to use again." "Nonsense,"
she said, "You always buy too much of everything! You have too many
bags as it is, and your medicine cabinet is filled with deodorant.
I'll throw it out on my way downstairs. No trouble." So out it went.
example: I was due to receive an unusually large check and did not
want a certain reader to know about it because he always made comments
that left me feeling uncomfortable when I got checks in the mail.
That day I painstakingly went over my mail and was able to identify
the check. I put it in my wallet. After we finished our reading
I remembered that I needed to identify some receipts I had accumulated.
I took them out of the change-purse compartment of my wallet so
that Ron could look at them for me. Suddenly, I remembered the check.
I found two pieces of paper of equal size in my wallet. Which one
was the check? What was the other one? The last thing I wanted was
find that the check had fallen out of my wallet.
felt both pieces of paper and took out the one I was sure was something
else. "Ron, what's this?" I asked. "A check for $3,500," he told
me. "Gee, must be nice to get such big checks!" My damn luck, I
thought to myself, the one person I didn't want to see this check,
and look what happens. I took the check and asked, "But what's this
other piece of paper, Ron." "Oh," he said, "That's a receipt from
a dog food order."
the most poignant example I know of how blind people are impacted
by lack of privacy happened to a friend of mine. After Paulette
had ended an affair with a blind lover she went for a pregnancy
test and was told that she would get the results by mail. When she
received a letter from the clinic she needed to know what it said,
but didn't want her family to know. With a heavy heart, she took
the paper out of the envelope and put it in her pocket. On the subway
from Brooklyn to Manhattan, she asked who was next to her. Often
sighted people won't answer when a blind person asks, but a woman
answered Paulette, and they started to talk. Paulette pulled the
paper out of her pocket and gave it to the woman. "Please read this
to me," she said. The woman took the paper, and gasped. "This is
private, she said." "It's okay," Paulette reassured her. "It says
. . . it says . . . you're pregnant," the woman told her. Paulette
took the paper back and thanked the woman.
"But why did you ask a stranger?" I demanded. "Well, I had to know
somehow," Paulette replied, "and I figured at least I would never
see her again.
it's a big problem, reading material isn't our only privacy issue.
The absence of privacy touches every aspect of our lives. If I want
to go to a gay club, for instance, but don't know where it is, I
have to ask a stranger to help me. This can be embarrassing and
then there's the problem of my . . . sneakers. I'm really kind of
hung up about them. Getting shoes that fit is a horrible chore for
me. Most give me blisters. When I find a pair I like, I wear them
until they are nearly ready to disintegrate. One black friend told
me my shoes looked like "early welfare" and when she saw me months
later said, "now they look like late welfare."
don't really care what they look like, but there was a practical
problem. On one shoe, part of the sole needed to be glued, because
the rubber was pulling away. Even shoemakers
refused to touch them They said the shoes were too old. My friend
Grant glued them for me every two weeks or so, but he had left for
Colorado. I asked a guy who lives in my apartment building, but
he refused to help. "Don't be so cheap," he told me. "Throw them
out and buy new ones!"
"Well," I thought, "I'll just have to find a way to do it myself."
A blind friend had told me about Googone, a liquid that gets glue
off surfaces. I bought a bottle of Googone and a bottle of contact
glue. I put some glue on my finger and managed to get it on the
right part of the shoe. Before the glue could harden on my finger
I grabbed the Googone and got it off. I put the shoe on the windowsill
to dry. I had done a beautiful job.
I couldn't use Krazy Glue like Grant, and true, it had taken me
almost twenty minutes to get all the glue off my fingers, but I
had done it. I wished I could have shown my beautiful glue job to
some sighted people, but they wouldn't have understood. So
now I glue my own shoes. I am proud to say I glued one two days
ago, and it is wonderful!
whole question of privacy and asking for help sometimes makes me
crazy. I would have paid anything to get a sighted person to glue
that shoe, but I couldn't. So I found a way. Not
all problems are so easily solved, however.
Of course privacy is an issue not only for blind people, but for
those who need help to care for themselves because of a whole range
of disabling conditions. So the next time you read your bank statement
or your phone bill, reach for a glass of water, write a check, or
use the bathroom, think of those who may not be able to manage those
ordinary life tasks without some help. Far too often, privacy is
a luxury for those who are able-bodied. Why is it, I wonder, that
the richest country on earth cannot afford to enable all of its
citizens to attain as much privacy and independence as they desire
and are capable of sustaining?
NOTE ON THE OPTACON:
Optacon is a machine that enables a blind user to read print, albeit
very slowly. Speeds of about fifty-to-sixty-words-per-minute are
extremely good, but rare. The machine consists of a camera which
you move along a line of print with your right hand while placing
your left index finger on a tactile array of 144 vibrating pins.
As the camera sees a letter, the shape of the letter (give or take)
is made by the vibrating pins. Certain letters, like small "g"
and small "y," hit the finger away from the tip. Letters
like "c" and "e" hit in the middle, while letters
like "b" and "d" hit the tip of your finger.
You learn to read by context, because the letters are easy to confuse.
use it to check envelopes that I have typed, or make sure my printer
is working. Depending on the print, I can sometimes read the return
address on an envelope. Sometimes I can also read the amount of
a check, but this is difficult. I worked for over eight months with
a private teacher to learn to use it the Optacon. I had terrible
problems learning to keep the camera straight when tracking across
the line, and I found it difficult to know how to change the amount
of light hitting the page so that print was clearer. I love the
Optacon, and wish it were still being made. It has really taught
me patience. I had gotten pretty good at the machine, but now I
only use it for very specific things and my skill has diminished.
©2001 Robert Feinstein
and Harley live in Brooklyn, NY. Search BENT's Table of Contents
and Archive for other articles by Bob.